the rights of persons with disabilities to make choices about their own lives kasia jurczak
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The rights of persons with disabilities to make choices about their own lives Kasia Jurczak. Conference on Autonomy and Inclusion Copenhagen 7-8 June 2012. Choice and control: the right to independent living. Encapsulates the social model of disability - PowerPoint PPT PresentationTRANSCRIPT
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Conference on Autonomy and InclusionCopenhagen 7-8 June 2012
The rights of persons with disabilities to make choices about their own
lives
Kasia Jurczak
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Choice and control: the right to independent living
Encapsulates the social model of disability
Outcome of other rights of the Convention
Illustrates the inter-dependence of other issues we have been working on
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A new perspective
Bottom-up approach: personal stories
Independent living: a multifaceted concept
Illustrative example, even if not statistically representative
Cross-disability perspective
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How was the data collected?
Data collected in 9 countries: Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK
November 2010 – July 2011 220 face-to-face interviews Focus groups with persons with disabilities Focus groups with stakeholders
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Article 19 of the CRPD: Right to live independently and be included in community
1. Choice of place of residence and where and with whom to live; not obliged to live in a particular arrangement
2. Access to support services of their choice; prevent isolation or segregation from community
3. Mainstream community services and facilities should be available on equal basis to persons with disabilities
Central to the realisation of other rights
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Living arrangements
“Homes” with institutional characteristics
Lack of housing options
Limited financial resources: underpaid employment and/or low benefits
Over-reliance on families “I want my own key and my own front door (Man, 34, Latvia)
Living arrangements
“No matter what it is called, for me it is an institution” (Woman, 52, Greece)
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Daily living
Education: segregated and of poorer quality, lesser opportunity for skills development
Employment: segregated, underpaid, lack of reasonable accommodation or automatic exclusion from the labour market;
Social isolation: segregated activities
“… deprived of the simple right to education and this makes you a cripple till the end of your life […]” (Man, 32, Bulgaria)
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Support options
Key for independent living
Personal assistance at home and work
Choice and control over support method and person
“In the employer model [personal budget] I hold normal job interviews (Woman, 32, Germany)
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Participation in the community
Empowerment through self-advocacy and peer support organisations
Development of independent living skills
Recognising the expertise people with disabilities bring
“People at the ministries should talk to people like me when they develop legislation and policy. They should ask us what we want and need, and not make our lives more difficult” (Man, 32, Bulgaria)
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Barriers to choice and control
Outdated legal capacity laws
Laws on involuntary placement
Austerity measures – poverty and exclusion
“[With all the cutbacks, when the services are not there, and [there’s] nobody supporting you, they will end up going back to these institutions. And we have to fight to make sure that they do not go backwards” (Man, 51, UK)
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Societal barriers
Bullying and harassment, sometimes resulting in criminal incidents
Barriers to forming intimate relations
Stigma “We will show society that we are capable too. We can do more than people believe. We need to come out!” (Woman, 53, Sweden)
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In conclusion
Implementation of the right to independent living: measures to give people more choice and control over their daily lives
Under-estimating the potential and contribution people with disabilities can make
Positive practice from across EU MS of policies that empower people with disabilities to live their lives independently
“This budget enables me to build my life all over again” (Woman, 49, Germany)
